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Ocular Histoplasmosis Syndrome: The Science Versus the Experience
Biology 103
2002 First Paper
On Serendip
Ocular Histoplasmosis Syndrome: The Science Versus the Experience
MaryBeth Curtiss
Ocular Histoplasmosis Syndrome is a growth in abnormal blood cells under the retina induced by exposure to a particular kind of histo fungus. Though the manifestation of this syndrome in the eyes is rare, a significant portion of the population has been exposed to this fungus. As the syndrome develops, the part of the retina responsible for close, sharp vision deteriorates and eventually, without treatment this can become complete blindness aside from peripheral vision.
It is extremely rare that the histo fungus affects the eyes. It is most common that the fungus manifests itself in the lungs, thus creating a lung infection that appears like tuberculosis (3). This infection, unlike the ocular infection, is easily treatable with an anti-fungal prescribed medication. Though fungal infections from Histoplasma capsulatum are more unusual in the eyes than the lungs, OHS is the most common cause of blindness in adults aged 20 to 40 (5). On the contrary, when the fungus reaches the eyes, the damage is irreversible and often difficult to detect and diagnose.
This progression, however, is not readily detectible in a routine eye check-up and requires a specific test involving close examination and pupil dilation. The examiner can, however, detect damage to the macula, or the central part of the retina, by presenting the patient with an "Amsler grid" and judging how the patient sees it and if the patient's vision has been affected (2). The examiner may also notice tiny histo spots or swelling of the retina(1). Once the disease has begun to develop, it is only treatable through surgical means, more specifically, laser photocoagulation of the retina cells (2). This recoagulation process only prevents future vision loss and does not correct what has already been lost. This surgery s also only effective if the eye's fovea has not been damaged and only if the surgeon is able to eliminate all destructive cells in the retina (2).
Such was the progression of the disease in my uncle's eyes about ten years ago. His histoplasmosis went undetected and eventually grew into partial blindness. However, my uncle's experience defied the typical progression in some ways. Firstly, the destructive cells were never detected, though he regularly visited an eye doctor. The deterioration continued until it again defied the typified OHS case, and he became completely blind in his right eye. Generally, the histo cells only affect the center of the retina, the macula (1). In addition, the laser photocoagulation surgery did not stop the progression of blindness, but delayed it. Like common cases of ocular histoplasmosis, he did retain peripheral vision in his left eye. My uncle, however also defied the odds of OHS sufferers, and, though he had some of the most extensive progression of the infection, continued to live his life the way he always had. He became an active, and often victorious member of our local Blind Golfers Association and continued to play basketball, watch sports, read as best he could, and compete in his gym's activities.
Doctors later speculated that the histo fungus could have been picked up in any of Bud's travels, through the "Histo Belt" through the central United States, or many years earlier in his travels to China and Japan. Though his travels in Asia were many years earlier, some of the doctors have suggested that the fungal cells could have remained dormant through the years until they surfaced in the early 90s. This incubation period is much different from that of the lung affliction, as this infection's symptoms appear within two weeks (4). Research and information is constantly changing concerning our understanding of histoplasmosis, when my uncle was first diagnosed, much of the information he was given was speculative and the surgery he received was still experimental.
Researching histo fungus, histoplasmosis, and ocular histoplasmosis syndrome raised more questions than provided answers. Why the difference in symptoms? Why the difference in time for symptoms? Why the eyes and lungs? Why are the lungs easily treatable and the eyes so difficult? One thing we may conclude, however is that everyone should be tested for this infection, as it is the most common cause of blindness for young and middle-aged adults and incurable, but easily delayed.
References
1) Ocular Histoplasmosis Syndrome, Useful for a general overview
2) Effectiveness of Laser Surgery, Procedure and statistics
3) Frequently Asked Questions, Information on the lung infection
4) Frequently Asked Questions, More general iformation
5) Histoplasmosis, Some new information
Comments made prior to 2007
The only treatment that has been able to arrest the scarring in my eyes is to take predisone tablets up to 50mg the first three days and then taper off. I had one retinal specialist advice me to not take this medication when I could see changes but he could not see the reactivity. I didn't use the medicene for a month and suffered more distruction of my macula and bindness around my left eye's blind spot. Finally I just started taking the medicene a former doctor had given me and immediately started seeing improvement. I have had about six reoccurances since 1968. I am 57. Even though prenisone is a potentially dangerous drug, I have to take it when the histo reactivates. It reactivates when I get really stressed. I continue daily to work on destressing my life. Most of the damage is in my left eye, but I have two small spots in my right eye. My right blind spot has some damage around it, but not as bad as the left eye. My blind spot in my left eye is as large as one-third of this paper. Maybe this info will be helpful to someone ... Loretta Taylor, 17 April 2006
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| This paper reflects the research and thoughts of a student at the time the paper was written for a course at Bryn Mawr College. Like other materials on Serendip, it is not intended to be "authoritative" but rather to help others further develop their own explorations. Web links were active as of the time the paper was posted but are not updated. |
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fb link
Could you please email the fb link to me also? Thank you, Margie
I need the Facebook link too!!
I couldnt see where you posted the link, would it be possible for you to email it to me?
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Hi, I couldn't see the link to Facebook, could you please send it to me? Or email me at mfran999 at
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Thank you!!!
Newly diagnosed at 33
Hi, I'm a 33 yr old female with POHS, reading all I can about this condition. I have always been severely nearsighted (glasses when I was 3 yrs old, contacts since age 8) and so I've always been vigilant about changes in my vision. I always have my eyes dilated at least once a year to check my retinas (at higher risk for detachment or tearing since I'm so myopic, my glasses prescription is -16). So, it was at least 10 years ago an optometrist first commented she could see a lot of histo spots, but they were all old and scarred over, and nowhere near the center so had no impact on my vision. I've lived in several "histo belt" states, so this wasn't that remarkable, just interesting trivia at the time.
However, a couple of weeks ago one morning I noticed a spot in my right eye, similar to the afterimage from a camera flash. By the end of the day I could see three little spots, all very close to my central vision. For instance, when reading, I notice a blank spot on the line immediately below the one I'm reading. On an Amsler grid there are three dark swirly spots closely surrounding the center dot.
I saw my optometrist the very next day, and she immediately referred me to a retina specialist. I was still assuming this was related to my poor vision, so was really surprised when it turned out to be a histo flare up. I had the dye injected to check for bleeding or fluid and luckily there is none so far, just the inflammation, causing that distortion. We tried a one week course of oral prednisone first, which had no effect on my vision, and just caused annoying side effects (hot flashes, joint pain, trouble sleeping).
When I went back one week later he repeated all the tests, and then recommended an injection of a steroid. I had read about Avastin injection, so was at least prepared for the idea, but this was a corticosteroid instead. And although it wasn't overly painful, it was certainly uncomfortable and upsetting. (I'll admit it, I cried afterward.) The weirdest part has been that the steroid was an opaque fluid, and a week later it has still not completely dissolved into the vitreous. So I can SEE the medicine swirling around because it is casting a shadow. I think it's finally starting to settle down now, but I'm still a bit annoyed he didn't warn me about this before the injection when going through the other possible side effects. A huge swirly black cloud in your eye is a pretty significant detail!
Unfortunately, no improvement of the spots so far. I'm scheduled to go back to the RS in about a week, and I'm not sure what next steps will be if there is no improvement. Right now it's a minor annoyance, but I could certainly still function perfectly fine if this is as bad as it ever gets. But the RS seems very concerned about how close it is to my central vision and the possibility of it spreading and causing permanent damage. Unfortunately it seems like there's no way to know what's most likely to happen. The uncertainty is very stressful, and of course I keep reading I should try to reduce stress. Easier said than done!!
I am so glad to know what the
I am so glad to know what the black swirly things were in my eye after the injections. I had no Idea what was going on. I was first diagnosed in December of 2011 and am recently going through a flare up. I guess it being due to stress. Grateful for this website.
Avastin vs. Corticosteriods Question
Hi. I have had POHS in both eyes for about 18 years (including a period of over 5 years with no reoccurances). When laser surgery did not stop the progression of the disease my doctors tried Prednisone, an oral corticosteriod, at 60mg with a very slow taper off. I had almost immediate improvement in my vision - I could go from not being able to read back to reading normal print within 3 days - and thankfully very few bodily side-effects. Whenever I had a flare-up I used the Prednisone and had the same results. We recently moved and my new doctor thinks that Prednisone has too many side effects on the rest of the body and does not want to prescibe it for me. She wants me to try Avastin injections. But I have read that there have been several cases of infections caused by improper handling of the drug, I imagine it's a painful procedure and it is much more expensive ($200 for an injection vs. about $8 for the Prednisone). I would like to hear from people who have had Avastin injections about how quickly you had improvements in your vision, how much it improved, and how often you have had to get injections. Did your doctors say you might eventually never need the injections because the Avastin deals with the causes of reoccurance? Thank you very much for your responses.
I was diagnosed with POHS
I was diagnosed with POHS Oct. 2010 in left eye and Oct. 2011 in right eye. I have had shots all but two months in left eye and they aren't as bad as one would believe. I continue to hope I wont need them but so far my left eye don't corporate. As for my left eye I did two shots then two surgeries and have had three good check ups all 28 days apart and return on this Wednesday to have tests to check both eyes. I do think the shots prevent progression and am very faithful to my appointments. I think most people only need 5 shots a year to keep everything in check and my doctor is great. He says they are developing a new drug that will last longer than 28 days so that also gives me much hope. Hang in there as there is hope.
Avastin
I was diagnosed With Ocular Histoplasmosis in 1998. While I have spots in both eyes, only in my left are they right inthe center of vision and that's where I had the first falre-up in 1998. My vision went donw to 20/40 in the left eye and we decided not to laser and wait. After to years, the leakage dried up. Everything was fine until another decline in vision to 20/40 in 2008. No treatment was possible since this time it was not a leakage, but one of the spots grew. It then started leaking the following year and I received 3 Avastin shots spaced 4-6 weeks apart. My vision was back to normal after 2 shots already. My Dr. says that it is unpredictable if and when I will have another flare-up. The shots themselves do not hurt because of the numbing drops, but your eye may feel irritated for a few hours afterwards. My insurance first refused to cover the shots, but then relented after my Dr. gave them a couple of phone calls. My Dr is an expert in the field and says the shots are now the best option. He never mentioned oral steroids as an alternative, but I'll ask him at my next visit. Good luck!
There's a reason
Some of the doctors are seriously reconsidering giving steroids for this condition. It may slow your loss of vision, but only for a few years. Steroids in high dosages have serious side effects. I'm disabled not because of the loss of vision from this disease, but because of brain injury likely caused by the steroids to treat the disease. Had the doctor been honest with me and told me what extended use of higher dosages could do, I wouldn't have taken them in the first place.
Avastin
Hey, My story is alot like yours. I have had POHS since I was 27 and I am 55 now. Many years with no reoccurances. In 1999 it started to get bad and Prednisone 60mg over 5days worked. And many times after that it worked. One time in 2003 it didn't and in my left eye I had leser surgery which did not work either. I lost much vision in that eye 20/200. Than in 2010 my right eye started to act up. Well my Dr. said Avastin would work better than prednisone and be better for me because the side effects over the years has hurt my kidneys. Avastin worked great in three days and no weight gain or pain in the area of my kidneys. Yes it is expensive but my Dr. hope it does help with reoccurance. Oh by the way it's not painful it they use the numbing gel. My dog died last week (big stress for me and I had a flair up and had a shot on Friday. It's Saunday and almost back to normal. Write me and tell me what you decided and how it worked. Good luck. Peggy
histoplasmosis
Hello~ I am 47 years old and about a year and ahalf ago I went from haveing 20/20 vision to practically overnight 20/400 in left eye. I was first diagnosed with wet macular degeneration, which they found peculiar at my age. I started receiving avastin injections right away, as I could look at you with left eye only and not see much of your face. Was petrified to say the least. I now have tri-fold glasses but the left eye has no perscription as that does not help vision in that eye. I went to Cleveland Clinic and he was stumped but did give me steroid shots in head for head pain. Finally after going to doctor in Columbus ohio, I was diagnosed with ocular histoplasmosis. The fluid continues to build in left eye, I have had 9 injections so far and luckily the histo spots in my right eye are not active. I hate the thought of this going on the rest of my life but do realize that it could be worse. we take our health for granted and only learn that after being afflicted with disease. God Bless and good luck to everyone!
avastin vrs. laser
I too am in columbus ohio I got diagnosed with ohs in nov 2010 I was 45 and have been getting avasin shots every four weeks. Every time we have tried to extend the time between shots the eye fills with blood. Even 1 week over and my sight goes away. I just don't see an end to these shots and don't know how much more I can take. Would you be willing to tell me who your dr. Was in columbus
Columbus Dr.
Hello~ Yes my doctor in Columbus was Dr. Opremcak. pronounced opremchek. The doctor that does my Avastin injections is in Dayotn Ohio. I am getting ready for my 15 th shot . I went 6 months without injections since the fluid stopped but then it started back. I am amazed that there are so many with Ocular Histoplasmosis. I never heard of it until I was inflicted. Hope you are doing well.
Columbus Ohio doctor
Hi. I was diagnosed eight days ago with OHS. The vision in my right eye became extremely distorted and when the large black spot appeared, I made a very quick trip to my optometrist. He sent me immediately to Dr. chorich at Midwest Retina in Dublin. I've had one Evastin injection and laser treatment already. There has been some improvement but I know it's still early. Anyway, he came highly recommended by my optometrist and I have been very impressed with him and his staff. Perhaps he can assist you. Best wishes!
POHS
A retinal specialist is the best person to help you. I went to several doctors before I had one prescribe ocular vitamins. Which seemed to help. Take them at night and give them a few weeks to work.There is hope I had lasix surgery "before" I was diagnosed with POHS in 2007. It was very scary in the beginning but I persevered and went to many doctors including an internist who found the hypertension was also worsening my condition. Whenever my pressure is high my eyes become light sensitive and inflamed. it's an autoimmune response. Also have a C~reactive antibody test to see if any other inflammation going on in the body. The best way to deal with POHS is make sure you're not exposing yourself to any environmental air borne mice, rat, bat and chicken guano. Stay healthy...
OHS and Steroid Therapy
I was diagnosed with OHS is one eye. I've had searing pain in that eye but steroids seem to alleviate it. Is this pain unusual for OHS infected people?
Hello~ I have had pain since
Hello~ I have had pain since the onset of OHS and my doctor continually told me there is no pain associated with it. I kept insisting that I have eye pain and head pain on same side of head. My neurologist has told me that it makes perfect sense that I have pain because there are nerve endings that would be affected by the the swelling and leaking behind retina. I am sorry for your pain but I must say I am relieved to here that I am not the only one experiencing it, if you can understand what I am saying. Good luck to you, I am thankful for this sight.
Hello Robin, My name is Robin
Hello Robin, My name is Robin and 6 years ago I was dianosed with histoplasmosis. I went to be with 20/20 vision and woke up with 20/300. I had the injections,and one of the top retina specialist in KY. Now in 2011 today as a matter of fact 11/09/11 I was just told I now have it in my other eye... Im truly devastated... I now live near Toledo OH, and have been referred to a retina specialist here. I can so relate to your fears, and concerns.. I have one lung that has the lower left lobe calcified now.. I want to know why after the diagnosis of histo had been made. Why have I not been treated with a sterioid? Im so scared of what the future has to offer. Im a full time psychology student, and cant imagine throwing it all away.. I wish you the very best.In your treatments the dr told me today it would take nothing short of a miracle for me... Which has left me in a deep state of depression..
Hello Robin! I am so very
Hello Robin! I am so very sorry to hear your news. Yes I have it in both eyes also but only my left is active. I believe the Avastin seems to be the best for many reasons, I am on my way to my 15 th shot. It is scarey and so agravating to struggle with vision.I am so sorry you are going through this and I understand. I am a single mother and I worry that if I can''t work or drive how I will take care of my young one. Hang in there and stay positive, we are all in this together. Lets stick together and support one another.
OHS
I am 43 years old and was diagnosed 16 years ago with OHS. I have had conventional laser treatments causing permanent blind spots in both eyes. I have also had photodynamic therapy and AVASTIN injections. I have had the most success with the injections. At one point, my insurance refused to pay for the AVASTIN because it hadn't been "approved" for my form of WMD. Apparently, the insurance company thought you couldn't have WMD unless you were a lot older! LOL! Instead, they would pay for the much more expensive PDT treatment. Thankfully, our new insurance will pay for the injections. If they didn't, we would still pay for them. A shot and a little discomfort is much better than being out of "commission" for three days while the photosynthesizing dye works its way out of my system. This is especially true for anyone who still works and has children to take care of.
So thankful for my "good eye"
Hello Everyone!
I was reading your posts and got a little bit excited that other people were dealing with this as well. I was 8 years old (1993), born and raised in Arkansas, when I first told my parents that I wasn't able to see very well in my left eye. As best as I can remember, the chalk board writing in my 3rd grade class looked a little blurry. My parents thought I was just telling them that because I wanted glasses like all my friends. My mom finally took me to an ophthalmologist and he said that I had blood/fluid in the back of my eye. Of course, she was shocked. My response: "See, I told you so." He immediately recommended me to a retinal specialist that day. When I went into the office, I was a little confused. There were no other kids like me, it was all "old people that reminded me of my grandparents!" I was given the thermal laser treatment, at that time, to stop the bleeding. My vision prior to the treatment was 20/400. That was the only treatment that was offered at the time, so unfortunately it left a scar in my central vision. My vision did improve to 20/60 after that. I didn't have another problem with it until I was 22 years old (2007). I was given another thermal laser treatment since it was so successful the first time. Three years later, when I turned 25 (2010) I noticed another change and had PDT performed. I like it so much better than the thermal laser because I think it is easier sit through. Unfortunately, I had to be treated almost a year to the date of the first PDT treatment again. I am 26 years old now and still occasionally get frustrated. My vision is 20/15 in my right "good" eye and 20/70 in the left eye. For the past 18 years I have continuously asked the drs, "why did this happen to someone my age?" and "do you have any more patients as young as me coming in here, yet?" I suppose that I was traumatized by the whole experience, often wondering "if something this RARE happened to me, what other RARE things might happen?" I try to stay positive and I'm lucky to have such wonderful doctors who have managed to help preserve the eye sight that I do have. I hope that there might be some advancements in the future that offer a repair to retinal scarring. Fingers crossed! Take care everyone and thanks for reading!
OHS
Was given a possible diagnosis before my trip to Georgia when I was 29. The blood vessels burst on the flight home and I had to have very invasive laser treatment losing my central vision with a nice bowtie scar. I virtually pioneered PDT in Wisconsin. I had to have 5 of them. I was never treated with drugs of any kind. I am 38 and as of last week, I now have a few floaters again and of course an appt with my retinal specialist. Are flare ups something that I have to live with forever?
Implantable Miniature Telescope - is this a possiblity for OH
My husband was diagnosed beginning of this year. I saw a special where they have found a possible 'fix' for Macular Degeneration by putting a Miniature Telescope in the eye to fix the central vision. I wondered why this could not be an option for Ocular Histoplasmosis. (website ) If anyone out there has info on this I would appreciate your thoughts/info. My husband has it in both eyes by working on a farm. He had a severe reaction to the injection in the eye (Avastin) (doctors thought it was gallbladder ). He has had 5 procedures with no improvement and alot of pain in the eye. He seems to have very severe pain if weather has high humidity or precipitation. Has anyone seen these symptoms?
ocular histoplasmosis
Hello, I am 47 years old and have been to numerous doctors. I suddenly lost my central vision in left eye about a year ago. I have received 4 doses of Avastin, they are unsure what my diagnosis is or how this has happened. Ocular Histoplasmosis has been suggested and sounds exactly like what I have. I have experienced eye discomfort from the get go, even before Avastin. They tell me I shouldn't have this "pain" but I tell them I do. After reading about your husband, I am intrigued. They tell me they see changes in my right eye now! This is so scarry. My heart goes out to your husband. Would be interested in the area you live. I am in Ohio.
Hi I was very interested when
Hi I was very interested when I read your story. I too live in Ohio and have had eye pain from the get go. The doctor keeps telling me that I shouldn't have pain, as If I am imagining this. I still to this day have eye pain, a year and a half after onset of histo and 9 injections later! I would be very interested in talking with you. I am 47 years old and live in the dayton area.
OHS
I too live in the Dayton OH area and have been diagnosed with OHS a year ago. I am no age 38. I see a Retinal Specialist named Stephen Miller, MD. I have had avastin injections. At first injection it completely took the blur away. Now 9 months later, while going through some very stressful health issues with my husband, I have again had major troubles with my left eye and the injections don't seem to be helping. This is very hard for my as I work on a computer all day and can't hardly function. I suffer from major headaches daily from trying to see. I also noticed that I have NO depth perception. This is totally freaking my out. I feel for all of you dealing with this horrible problem and I hope one day they can find a cure. I don't want to go blind. I also feel now my right eye is starting to be affected.
OHS
Amanda I fully understand your concerns. I am 41 now and was diagnosised 2 1/2 years ago. I have had shots almost every month in my left eye up until this past month, in which, the retina specialist has opted to quit giving me shots as my vision is worst than 20/400. That basically means the shots never worked to stop the Histoplasmosis but maybe prolonged me losing the sight. My right eye also has the disease and it hemorraged 1 1/2 years ago exactly 1 year after my left eye was diagnosised. My retina dr. at that time gave my right eye a shot and scheduled me for laser surgery to stop the hemorrage. The first surgery was unsuccessful so had to have a second surgery two weeks later and lucky for me my right eye has been stable for a year and 5 months now. If you feel your rt eye is giving you issues do not wait to get it checked out. The sooner they find the issue the better chances or fixing it. I to work at a computer and have lots of blurry vision and head aches. I no longer see depth and very causous when driving and walking on stair expecially. I have just requested assistance at work through a program called Stay at Work. I was actually on the phone with a lady when i received the email on your comment. They say there are lots of options for low vision to allow me to work from my computer including programs that turns text into audio words. I will have to be assessed by a low vision specialist but what is that going to hurt. Just stay positive and make sure you trust your retina specialist and report changes in your vision right away. I love my retina specialist as i see Dr. Matthew Thomas with Barnes Retina Institute in St. Louis Mo. However, he protrays to me that life events such as stress dont have an effect on this disease, I am not so sure I believe that. Although I have had continued problems with my left eye since diagnosis I did not lose the vision beyong repair til couple months after I too was dealing with major health issue of my husband and he passed away. Good luck to you!
Histoplasmosis
I have also experienced POHS and found myself not being able to see out of my left eye one morning in 2002. My case was even more complex as I had Lasix for nearsightedness and my doctor thought it was the actual surgery that caused the inflammation. I went about 4 years before I received a POHS diagnosis. During that time my eyes were on fire, extremely sensitive to light, massive floaters and flashes of light. My doctor just kept me on ocular vitamins, high fiber diet lots of fruits and vegetables and Predforte drops 3x a day! Eventually the classic round lesions healed and my eyes were saved from any ill effects. I'm still sensitive to light and have lots of floaters but my site is near perfect. I wear sunglasses at all times outdoors even on cloudy days. I also don't do any up and down exercises such as jump rope or jogging. This seems to jostle my eyes(bobble eye) and makes the worse. Also if you're sick or stressed find something ASAP that makes you feel better(massages work great!!) STRESS is the number on reason for POHS flares. I have not had any flares since 2006! I prayed a lot too. I know that helped too...The doctors can see the lesions in both eyes but they are completely healed. Lots of scar tissue and eventually I'll have to have cataract surgery(result of steroid drops). But they slow moving and aren't affecting my site yet... I hope this helps and remember I didn't have Avastin shots nor did I want them! I became my best advocate! Also, I almost forgot the most important advice...Water,water and more water. Carry it with you at all times and drink at all times! Dehydration is the worst enemy to our "living" bodies....
oh
I just found your web page, my husband is now close to 60 yr., he was diagnosed with OH in 1978, he lost the central vision in the left eye at that time, he had lazer surgery, non successful, but, at that time, that's all that was available. Now, in April of 2010, he started seeing waves in his good eye, he has lesions in both eyes, but, the right eye is away from the central area. After our regular eye Dr., he got us into a specialist, he saw the problem and said we had 2 choices, either the lazer or the injection, he chose the injections, this looks like it could be an on going, as he keeps getting the fluid back. Have any new procedures came available?
Ocular Histoplasmosis
I am 49 years old and have lived with Ocular Histoplasmosis for five years. In the five years of being diagnosed I have had around 20 injections, starting with Macugen and now Avastin. I have had 3 PDT treatments also. My left eye seems to always be leaking, resulting in another injection. I have histo spots in my right eye also that are not active at this time and I am very thankful of that. It is hard for me to drive at night also and I rarely do. My depth perception is also off. This is a wicked disease and the only thing now to do is for my Retina Specialist to try to keep it from getting worse. I see him faithfully. My question is, What is the difference between Ocular Histoplasmosis and Macular Degeneration? They seem to have the same symptons and same treatments.
Hi, 43 year old father again.
Hi, 43 year old father again. Well, I had my final test yesterday with a flourescent die injected in my blod they took pictures of my retina. I have three tiny (about 1/32 inch diameter histo spots. One had aparently stoped bleeding and did'nt cause any macular damage some time ago.two that are bleeding now and have caused a distortion in my vision. I was treated with an injection of Avistan and will be rechecked in 4 weeks and possibly get another treatment. My doctor said they have had improvments in vision and bleeding stopped in 90% of patients treated. I still am able to see 20/20 with my glasses, so I would be happy if there is no further damage. He has'nt mentioned any other possible treatment yet. I believe the laser causes permanent damage to the cornea so that's a last resort. I'm praying that this treatment works. And praying for all of you also. I thank God that there is some hope
im really scare i dont know
im really scare i dont know how i got this i was diagnose with this yesterday im only 20 yr old.. what should i do what kind of treatments am i going to start taking is it painfull??
OHS
I am a 43 year old father. I hurt my left eye at work pretty badly, and thank God that the opthamologist thinks it's temporary but this forced me to take notice of a slight distortion in the vision of my other eye just into my central vision. they found a small spot that looks like OHS and now want to treat with Avastan, after ruling out one other condition,not treatable but also not as serious. My family and I depend on my vision as I am a tool and die maker by trade. Because of a decreased demand for anything manufacturing, I've Been forced to fall back upon related skills in the shipbord repair industry where good vision is a requirement for credentialing and employment. It sounds like there is hope in the treatment with Avistan and hope that I caught this in time before more vision loss has occured.
Sudden loss of vision
I experienced a sudden loss of vision with 4 small and one large blind spot, pulsating vision (which actually preceded this event by about a month, but I wrongly attributed to migraines) and straight lines appearing curved, in January of 2009. My vision was very blurred, and when I looked at someone's face, there was a black hole in place of their mouth. It was very disconcerting to say the least. I was fortunate to get an immediate appointment with my eye practioner, who after taking pictures, identified the inflamed lesions on my left retina. He immediately referred my to a retina specialist, whom I saw the next day. After reviewing the pictures, and taking additional pictures, he diagnosed POHS. From January through July, I had one injection of steroids, one laser treatment, then four injections of Avastin atfive week intervals. I saw no improvement until the third injection, then dramatic improvement with the fourth. My vision has now nearly returned to levels prior to this occurrence. I understand that I may have a recurrence at any time, in either eye, so monitor my vision regularly with the Amsler Grid.
This is a very frightening disease as it is very difficult to get answers as to prognosis, simply because the doctors don't know why anyone gets it, or how they will respond to treatment. I was fortunate to, by chance only, get with an excellent, highly experienced in this disease physician, and even so during the months I was seeing no improvement, he could offer no guarantees, or even any assurance that eventually it would work. He just did not know.
My advice to anyone suffering from this: Do your research and make sure you are getting the most recent treatment as research continues and new developments happen. Make sure you have a doctor experienced and competent in treating POHS. And above all: stay positive, stay with your treatment, and be persistent. It is your vision, and once it is lost, there is no getting it back.
Scared!!! OHS......what a devestating thing
I started this journey several months ago. I got to the point that I couldn't drive at night....thought I had night blindness. The headlights of the cars completely blinded me. Then it started to affect my day driving as well. But this time it was the sunlight and the reflection off of the cars. I could no longer tell how close or far things were. I quit driving and two weeks later went to see my eye doctor. Thinking I needed glasses due to my age of 50. How sad is that? She dialated my eyes and did some vision stuff, afterwards she told me she thought I had histoplasmosis. I told her I was diagnosed with that in my lungs in my early 20's. How could that have damaged my eyes 30 years later? I was referred to a retina specialist and after some testing, he told me that I have it in both eyes. I thought my left eye was the worst, but he says the right eye is. I have very large membranes and some bleeding in both. The right eye has the larger membrane, but has not bled as much as the left. I have received one injection of Avatin in each eye so far. In two weeks I go to be checke and more injections. My insurance does not pay for the injections becase they are experimental. He told me that I would have to have 3 to 6 injections in each eye and that there are no guarantees. I work on a computer all day and it is getting really hard to read. I have a magnifying screen on my computer and I have strong reading glasses, but the frustration of it is horrific. I squint my left eye to read better and that causes me to get headaches all the time. The retina specialist told me that he cannot do the laser surgery because it would take me vision totally. The membranes are covering my central vision? He also told me that it is very rare to have it in both eyes at once. He calls it bi-lateral ocular histoplasmosis sysndrome. I am so scared. What if these injections don't work? Are there any other treatments out there? I have been looking into disability, but that is scarey also. I have become very depressed and it is hard to wake up every morning. Does anyone have any advise?
Histoplasmosis, ocular
I just wanted to tell my story to everyone. In 1988, at the young age of 22, I started to have problems with my vision. It started in my left eye. I had a small blurred spot near my central vision. When I finally got to my family doctor, he recomended me to another opthomologist locally. H e examined me and said it was histoplasmosis and said he couldnt treat me. He sent me to an out of town retinal specialist. He informed me that I had a detached retina and leakage and I needed surgery right away. It took a total of 6 laser surgeriesand a year and a half to get it to quiet down. In the meantime I had histo spots in bothe eyes, but my right eye wasnt leaking. During this time I was a Mother to 2 small kids, trying to take care of them alone. Fastforward 13 years later and I woke up one morning and looked at my celling and low and behold there was another histo spot, this time in the right eye. I was devistated. I made my appointment with ny eye Doc, and he cofirmed that it was active and it was near my central vision. He recomended several things, such asvisudyn therapy, kenelloge injection, laser therapy. Nothing worked. The only thing that was left for me was to have a vectrectomy. A surgery where they physically go into the eye a remove the leaking membrane. It was evasive. Did it work, yes it did. What I am trying to say is dont give up, theres no reason to give up. It looks like it will never end but it will. The doctors have told me that STRESS plays a very big factor in the resurgence of histoplasmosis. I still drive, even though I have very little central vision left and I have applied for diability and have been turned down, They told me I didnt have enough of a disability. LOL. Find you a Low vision specialist and work with them. They can help you and dont settle for I cnat do anything to help you, keep looking. You will find hekp. Get some Low vision equipment and learn how to use it.
OHS
My father was diagnosed with OHS in the late 70's and applied for disability. I was very young then but I remember this struggle in my families life. Dad was a construction worker and a Roofer. Sight was important for his safety. It took him several years and a lot of trips to the Dr. to prove it but he was eventually awarded disability for his condition. Keep trying, and thank you for sharing your story.
POHS
I'm 37 years old and just found out I have POHS. My right eye has histo spots that are harmless but need to be watched, but my left eye has a large membrane right next to my macula. I don't have a blind spot, but I have distorted vision. The retina specialist I went to gave me an injection of Avastin, but he doesn't know if it will work. We'll have to wait a few weeks to see, and I may need more injections. It's not covered by my insurance, so I'm definitely worried about the cost of treatment - and if it will even work. I didn't realize until today that my vision may never return. I'm definitely scared!
Avastin Treatment
I am 26 and I lost complete central vision in my left I 6 months ago due to ocular histoplasmosis or POHS. I have had 3 Avastin injections which dramatically improved my central vision. I still have a small scar which distorts my vision, but I only notice it if my good eye is covered. The Avastin treatment is not covered by insurance, but cost me around 200 per injection. I no longer need the injections, and will be getting check ups once every 3 months. I had my eyes checked last month and my vision is 20/20 with the same strength lenses I had before POHS. There is hope! I strongly recommend you stick with the Avastin treatments. Good luck!
Nice!
I just had my first injection with Avastin. I was incredibly worried until I read your post. Great news!
Hi ..I am curious if the
Hi ..I am curious if the procedures you had improved your central vision that you said was completely gone? have you had any more Avastin treatments since then?
That is great news! I was
That is great news! I was diagnosed with OHS 2 months ago. It's so strange, and sometimes I get a laugh out of how weird things look! Oh, I try to keep my sense of humor about it, that's how I get through things. Anyway, I go in for my first Avastin injection on Friday, and I'm kinda nervous about it. Now at least I have hope that it could make things better. I only expected it to keep things from getting any worse.
I meant *my left eye,, not
I meant *my left eye,, not I. :P
My Eyes
I am 34 years old, and I have lived with this since I was 19. I see better than I should, and I am thankful for that. 20/400 in my left eye, and 20/80 in my right. I am very active, I work, have a family to look after and I am afraid that as I get older, my vision will completely fail. I said I am 34 years old and I wear tri-focals. And as I sit here and type this, I feel as if I could break down. I am scared. This is not something that I think of often. It kinda just stuck there in the back of my mind, the what if.. I know this may sound stupid, and maybe I am for even writing this. However, this disease..fungus..whatever it might be took my 20/20 vision and changed my life forever.
I read your eye concerns,
I read your eye concerns, and being 57,I to have it in my left eye now. I had it in the Rt. eye in the early 90's,had all the regular laser surgery times 2.I did not know much of the disease,thought that once I had it in this eye,I was good to go. I thought wrong, I now have it in my Lt. eye,10 times worse than the RT. eye. I had to retire early due to my job,and driving,and at present I need to have another laser surgery,sad to say I cannot even go the doctor if I have a cold, much less this eye surgery again. I to know where you are coming from,just losing my husband to cancer, and now this,WOW what a hard ride, but with GOD,and his strength I am O.K.,knowing all the other people who are terminally ill,or little children,I am bless beyond words. God Bless you, in your process,and my prayers will go up for you. GOd Bless
I woke up one morning and
I woke up one morning and could not see out of my left eye. I went to several ophthalmologisits. I was diagnosed with Uveitis. I was given predforte drops and was asked to pour them into my eyes. After the first bout of Uveitis my doctor gave me the news that my eyes were riddled with holes. They told me there was nothing they could do for me! I kept going from doctor to doctor searching for answers. I finally found a doctor who thinks I may have OHS. The holes in my eyes are punctuated and referred as histo-spots.I'm really scared because it would make complete sense because my husband and I own a pest control company and I have been exposed to alot of bat and pigeon droppings... I really need some information on OHS. Is there a test to test for histoplasmosis antibodies?
yes, there is a test for
yes, there is a test for histo antibodies, but it is practically useless, due to the fact that up to 60% of the population in the Midwest would test positive. Needless to say, 60% of the population does not exhibit symptoms or there would be more research being done!
i have had OHS for over 30 years with recurrent bouts of varying degrees of vision loss. after several (sometimes painful) treatments, i was told there was no hope.
i'm sorry i can't offer you a cure, or even much of a positive outcome, but i will tell you that the symptomes of a flare-up (blurred vision, loss of visual field) subside somewhat after each flare up.
God bless...and take care